Tuesday, November 27, 2012

You Must Be Joking

And so, the long awaited update to the saga of Bobby's special education needs.

If I wrote out posts of nonstop cursing, then this one would start with huge, shouty capitals with every F-word like slang I could muster and would end with the phrase, "REALLY???? YOU MUST BE F---ING JOKEING!"

But, it's not. I'll try to be rational and normal (at least a bit). But I'm still pissed.

So, in PA (and maybe elsewhere, I dont know), all children with a diagnosed special need or developmental delay are eligible for state insurance (either as their be all, end all insurance or in addition to insurance that you may hold for them; for ease, it's referred to as "MA" or Medical Assistance. When the kids were born, because they were so early, they were also eligible for one year of MA, in the event any disabilities or special needs came up. The hospital social worker handled the paperwork and the kids were approved. We never used it because I didnt feel like we should (we had insurance after all); because, even had we wanted to, the pediatrician we wanted didnt participate; and because the kids never had any special needs. After a year, it lapsed and went off my radar. When Bobby began needing special assistance and our pediatrician diagnosed him as "developmentally delayed" followed by the psychologist's diagnosis of PDD-NOS, we were advised to get MA. The IU asked us to, so that some of their costs could be reimbursed (since the service is "free" and paid for by school taxes, etc), and we were advised by a friend in the system to do so to expedite Bobby's services. I was also told that things like additional speech, additional OT, a personal aide for school, and even behaviorial therapy could be covered.

Stupid me! I actually bought into that!

After several conversations that have included me being told that a) Bobby cant use MA because he has other insurance, b) that Bobby can use MA but only if we drop our pediatrician and take him to the one that MA assigned him (since ours doesnt participate) but even then, there's no guarantee he'd get the services he needs (like speech, etc), and c) that if I want Bobby to have speech or OT, I will have to drive him an hour+ away for services because there is no one in our area who will provide them. (Really? An hour each way plus the hour for service?) One woman, who clearly wanted to be helpful but had no idea how to be, told me that maybe a nurse could help get care at home for him, so she would have the nurse call me.

I had that conversation this morning and what a waste of my time. First, she asked me if I had contacted any autism foundations. Well, I have looked into them, but it's not like they are going to provide services! She explained that a lot of people dont realize they can find resources online. Okay... I get that. And, perhaps if I hadnt been getting the runaround, I wouldnt have had the internal dialogue I was having, but come on... I've just spent more of time repeating the same thing that I've told 3 other people, only to have you ask me if I have gone online and looked up autism in Google??? Really???

After being told that home based services were out of the question because Bobby isn't an invalid, I then had to explain to her why a child might need speech or OT services, then explain that OT and behavioral therapy are not the same thing (and why), and then sit while she told me that maybe all he really needed was a shrink to talk to. If he talks out his problems to a therapist, he might not have any behavioral issues anymore.

REALLY? HE HAS A SPEECH DELAY. HE CAN BARELY TALK TO ME AND HAVE IT UNDERSTANDABLE, LET ALONE A THERAPIST. Yes, his behaviors can often be traced back to a lack of communication and understanding, but HE CANT TALK LIKE A 3 YEAR OLD. Hence back to why he needs speech therapy... And the circle continues.

At the end of conversation, I felt like I was more informed about the types of therapies I was talking to the nurse about, and that, as I'd feared, this was all just a waste of my time. The combined hours I've spent talking to these people I could have spent talking to our insurance, who actually has an idea about what I'm talking about and who is still (cue cursing) debating on whether or not to cover speech therapy.

But let me not forgot the other fun part of therapy negotiating! The IU... Based on the report from the school, Bobby is doing well with the BSC and SEIT who are coming to see him in class, so that is good news. Really happy about that. Speech and OT? Nada... So, I sent an email to the IU explaining that if, by December 10th (which is 3 months after B's 3rd birthday), all of his given services are not in place, then I am going to start contacting whoever will listen and complain. I always hated with patrons contacted their local officials, congressmen, etc, to complain about the library system or the state/local agencies they were pissed at, but it got things done (sometimes even when things shouldnt have been). Enough's enough.

An OT contacted me yesterday and says she can start on Thursday. I left her a message to confirm, but amen.

An SLP? Nothing... And this is the service he needs most! Not to mention, they still havent forwarded me the psychological evaluation yet.

What sucks so much is I'm still hoping they will turn out like Early Intervention, who were wonderful and helpful and did everything they could... But the IU is shaping up just like the other special needs parents I've talked to told me they would. To the point that I know several parents, who have kids with serious issues, who have completely walked away from the (sometimes nonexistent) IU services they were promised would help their child. It's sad.

This entire thing, however, makes me so incredibly grateful for the outstanding school administration and teachers. In the nightmare that this has been at times, those women are out of this world. After Bobby's diagnosis, the principal emailed me to tell me we were in her prayers and to offer her support. His teacher continues to go above and beyond in making every day a good experience (and a learning one) for Bobby. When Peter and I went in for that Thanksgiving party (and I'll have to post the video), the child who was there, was not the child I thought I'd see. Bobby, while clearly not like every other child, was way more adjusted that I could have imagined. With the support of the teacher and classroom aide, as well as his other aides, he continues to improve and get better. Which is such a blessing. He wants to be there so much; knowing that he can be there and work up to his potential makes it so worth it to fight for everything he needs to get there.

Michele, I am so sorry that you are going through this. I know it is not much consolation but I've been going through similar sounding craziness trying to get any support for Jess on this side of the pond. And that's, in the main, without the additional complication of who is going to pay.

The whole talking things out thing REALLY irks me too! I have had FOUR YEARS of experience in trying and desperately wanting to communicate with this child and you're telling me that talking is the problem. I KNOW IT IS THE PROBLEM. THAT'S WHY I"M HERE TALKING TO YOU. Who appear to have a problem with LISTENING!

I think that with some ex-preemies, like Bobby and Jessica, the problems are so difficult to define that nobody seems to want to offer support. I had a conversation with a lovely and well-meaning psychologist this morning who asked me if I had considered using stickers to potty-train J. Oh no, the thought never crossed my mind . . . sigh. Heavy sigh.

Good luck with the SLP. Ours, along with physio, are some of the good guys. I know that I don't write much about how things are going with Jess but I just wanted you to know that I am slogging along, right there with you.

I'm so glad you have great support from the school, that is so important. Your description of Bobby, clearly not like any every other child, but so more than you had imagined could be a description of Jessica. They sound so very similar in many respects. Kind hearted little souls trapped by not being able to get their words out there in the open?

Geesh, what a comment. Sorry Michele! Just wishing you and Bobby and Maya and your dear little one all the very best and to let you know that I will always think of Nicholas, Sophia and Alexander and all your precious little stars.

You probably already know about this, but under Act 62 in PA (aka Autism Insurance Act) certain services MUST be covered by the law. This includes speech therapy, occupational, physical and behavioral therapies. (I also live in PA and work in health care.) The Autism Act mandates coverage for Speech Therapy. There's more to the law, but I can help you to understand it if needed. Although websites may not provide services, there are organizations that can arm you with information and point you in the right direction - they can help you learn what questions to ask. For example, I would ask your current health insurance if they cover the Autism Mandate (Act 62) if so, Bobby's services should be covered under there. Ask if they provide coverage for Autism Spectrum Disorders. Also, Health Care Reform has pretty much eradicated the $36,000 annual cap on services. I can talk to you more about this if you want to email me. Putterpie81@gmail.com Here is a link to Act 62 and more information - http://www.dpw.state.pa.us/foradults/autismservices/paautisminsuranceact62/autisminsuranceactfactsheet/index.htm